Emiliana Rodriguez remembers witnessing friends play a nocturnal game of soccer when one of the participants unexpectedly passed away on the field while she was a little child.

Without knowing what had happened, Bolivian-born Rodrguez began to fear the night and the “monster” she had been informed only emerges at night, the silent killer known as Chagas.

A distinct kind of monster, known as “silent and silenced disease,” chagas is spread by nocturnal insects and affects up to 8 million people annually, killing 12,000 people on average.

After moving to Barcelona from Bolivia 27 years ago, Emiliana Rodrguez, 42, learned she couldn’t avoid Chagas, which she refers to as a “monster.”

“The fear usually came at night. Sometimes I didn’t sleep,” she said. “I was afraid of sleeping and not waking up.”

When Rodriguez was eight years old and expecting her first kid, she underwent certain tests that showed she was a Chagas carrier. “I was paralysed with shock and remembered all those stories my relatives told me about people suddenly dying,” she said, also recalling the death of her friend. “I thought, ‘What’s going to happen to my baby?’”

However, Rodriguez received medication to stop the parasite from being vertically transmitted to her pregnant kid. She tested negative following the birth of her daughter. When Elvira Idalia Hernández Cuevas’ 18-year-old was diagnosed with Chagas, she had never heard of the silent killer in Mexico.

Idalia, 18, was donating blood in her hometown, close to Veracruz, Mexico, when her sample was examined, leading to a positive diagnostic for Chagas, a condition brought on by triatomine bugs, also referred to as kissing or vampire bugs and blood-sucking parasites.

“I had never heard of Chagas so I started to research it on the internet,” Hernández said in an interview with the Guardian. “I was terrified when I saw it described as a silent killer. I didn’t know what to do or where to go.”

She is not alone in this; many individuals are not aware of the vectorborne diseases these bothersome bugs cause. Carlos Ribeiro Justiniano Chagas, a Brazilian doctor and researcher who discovered the human case in 1909, is the inspiration behind the name Chagas.

The prevalence of Chagas disease over the past few decades has been documented throughout Latin America, North America, Europe, Japan, and Australia.

Kissing bugs mostly live in the walls of low-income housing in rural or suburban areas and are most active at nighttime when people are sleeping. The bug passes the T. cruzi infection by biting an animal or human, then defecating on the skin of its victim, who may accidentally scratch the spot and break the skin, or spread the feces into the eyes or mouth.

According to the Centers for Disease Control and Prevention (CDC), in Mexico, Central America, and South America, approximately 8 million people–6 to 7 million worldwide as reported by the World Health Organization (WHO)– have Chagas disease, the majority unaware of their infection. When left untreated, the lifelong infection can be a killer. About 12,000 people die of Chagas each year, killing “more people in Latin America than any other parasite disease, including malaria,” writes the Guardian.

Though these bugs have been identified in the U.S.–close to 300,000 people are infected–it is not considered an endemic.

Some people never develop symptoms but CDC reports that decades later, 20 to 30% have cardiac complications that can lead to death, or gastrointestinal complications, which can cause severe discomfort.

And the global case detection rate is only 10%, which makes treatment and prevention very difficult.

Looking for some support, Hernández and her daughter Idalia visited several doctors who also knew very little–if anything–about Chagas, or how to treat it. “I was surprised, scared and sad because I thought my daughter was going to die. Above all, I couldn’t find out any reliable information, and this added to my anxiety,” Hernández said.

Finally getting some help from a family member who worked in health care, Idalia received the treatment she needed.

“In Mexico, the authorities say that there aren’t many people affected by Chagas and that it’s under control, but that’s not the situation,” says Hernández. “Medical professionals don’t receive any training and mistake Chagas for other heart diseases. The majority don’t realize there is Chagas in Mexico.”

Chagas is listed by the World Health Organization (WHO) as a neglected tropical disease, meaning it’s not getting attention from the global health policy agenda.

Colin Forsyth, a research manager at the Drugs for Neglected Diseases Initiative (DNDi), explained that Chagas is neglected partly because “it’s a silent disease that stays hidden for so long in your body … because of the asymptomatic nature of the initial part of the infection.”

Referencing the poor populations, Forsyth continued, “The people affected just don’t have the power to influence healthcare policy. There’s this confluence of biological and social issues that keep it hidden.”

However, as Chagas spreads to other continents, it is becoming more well understood that it can spread through organ and blood transplants, as well as from mother to child during pregnancy or childbirth.

Professor David Moore, a consultant at the Hospital for Tropical Diseases in London, created the Chagas Hub, a UK-based facility with the primary goal of having “more people tested and treated, and to manage the risk of transmission, which in the UK is from mother to child,” he said.

Moore said that progress in eliminating Chagas is “glacial,” and addressing the target set by WHO for a 2030 disease elimination, he said, “I can’t imagine that we’ll be remotely close by 2030. That seems highly unlikely.”

Chagas can be treated with two medicines, benznidazole and nifurtimox, both on the market 50 plus years, that Moore says is “toxic, unpleasant, not particularly effective.”

There is no assurance that the drugs will stop or slow the progression of disease in adults, even though they can cure a baby.

When it comes to serious side effects, Rodrguez recalls breaking out in hives and experiencing nausea and dizziness. She finished her therapy and has yearly checkups.

Moore adds that developing more potent Chagas medications is essential for halting the disease’s spread, but there is now no financial incentive for pharmaceutical firms to do so.

Hernández is on a mission to bring attention to the silent disease in her capacity as president of the International Federation of Associations of People Affected by Chagas Disease (FINDECHAGAS) until there is a greater market need to create new remedies.

Rodriguez is fighting the “monster” in Spain, where the Barcelona Institute for Global Health is running a campaign to raise awareness of Chagas.

“I’m fed up with so much silence,” Rodríguez says. “I want people to talk about Chagas, and to know about it. I want people to get tested and to get treatment.”

And, they are being heard.

On April 14, the day that Carlos found the first human instance of the disease in 1909, the WHO established World Chagas Disease Day.According to the WHO, “Global targets for 2030 and milestones are set out to prevent, control, eliminate and eradicate a diverse set of 20 diseases and disease groups.” Chagas is one of these.

The CDC advises the following actions to avoid a potential infestation:

• Seal cracks and gaps around windows, walls, roofs and doors
• Remove wood, brush and rock piles near your house
• Use screens on doors and windows and repair any holes or tears
• Seal holes and cracks leading to the attic, to crawl spaces below the house and to the outside
• Have pets sleep indoors, especially at night
• Keep your house and any outdoor pet resting areas clean, in addition to periodically checking both areas for the presence of bugs

The CDC advises against crushing kissing bugs if you think you’ve found one. Instead, gently place the bug in a container, add rubbing alcohol to the container, then freeze the container. After that, it is advised that you take the bug’s container to a university lab or your local health authority for identification.

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